Progressed from RRMS to SPMS - Please GOD, Life is a bitch and then you are DG with MS.
Promise you guys, I am coping well, but one Nuero apt. every twelve months, and one very overworked MS nurse every 4-6 months does not help. After 2 years of being registered with a new G.P. I was awaiting my first appointment (made three weeks ago, and they phoned at 8 this morning to cancel, and re-booked for 22nd Dec. just for me to air my views about the total lack of understanding. In two years, I have seen three times a locum, just to discuss and get the new prescriptions suggested by my Niuero.
Last month, sadly after almost a year without bladder problems, my Botox failed. Back to huge incontinence pads, 24/7, changing bedding almost twice nightly, washing two to three changes of clothes daily, I asked for a repeat prescription of Neditol and Betmiga which previously had been prescribed for several years, prior to Botox - no they made me make several trips to the Surgery before they agreed to give it to me again. I spent three weeks unable to almost leave home, as within 5-10 mins my pads were full and leaking.
I have made this apt. with my registered G.P. in order to say that I do not take all of my prescribed meds unless necessary, but when I have a problem, I really do need attention.
My G.P. practice have made it very clear that they will not see me if my problem is MS related, I must go to Nuero first. So in the last few months, I have started with the water curtains across my eyes. About six weeks ago, I woke up on the sofa in the middle of the afternoon with a complete numbness in my right arm. pins & needles, cramp etc. but sadly didn’t stop for a few days, seriously thought I had suffered some kind of stoke, but frightened to go to the G.P. as it could be MS related, so they would not help. I spoke to lovely Lisa, and she confirmed it was probably my MS moving on. So now dead left side as well as right, can’t use my walking stick in either hand.
So guys and dolls, the question is - how do I get my new overworked G.P. on my side. I think no more than four appointments in two years is not really pestering an overworked N.H.S. system.
I do not want to be a burden on anyone, but this situation is making me depressed, stay in bed a lot, cop out of the gym, don’t eat properly, as I am so fed up with bring ignored by one and all
Help please xxx